Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > PNH
Register FAQ Search Today's Posts Mark Forums Read

PNH Paroxysmal nocturnal hemoglobinuria

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Apr 13, 2021, 01:06 PM
Nickie W Nickie W is offline
Member
 
Join Date: Apr 2021
Location: Redlands Ca
Posts: 1
HRT with PNH

Hi,

I'm new to this forum I've had PNH for 18 years now. I'm being treated with Ultromaris. I'm 41 years old and I'm starting to have peri menopause symptoms, so my endocrinologist gave me a low dose birth control. I'm scared to take it because obviously blood clots, however my doctor called Alexion and they said patients that were on HRT while taking Soliris did not have blood clots while on the study. So I was just wondering if any of you ladies have gone through this and had any experiences that you could share with me? Any help would be greatly appreciated.

God Bless!

Last edited by Neil Cuadra : Thu Dec 30, 2021 at 10:39 PM.
Reply With Quote
  #2  
Old Fri Dec 24, 2021, 09:04 AM
Junior48 Junior48 is offline
Member
 
Join Date: Nov 2020
Location: New York
Posts: 6
Ultomaris

Hi, unfortunately i can not answer your question. But i would like to ask you about your experience with Ultomaris. My sister may begin treatment in 2022.

How was your experience with it? how long have you been on it? is the treatment indefinite unless there is a significant change in PNH clone/symptoms? Have you noticed any side effects? Were you able to get it administered at home or did you go to a medical facility?

thank you
__________________
JR, sister dx with AA 2010; ATG 2011; PNH clone increase in 2019[60%]; current treatment; blood thinner/Cyclo
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Two PNH Drug Trials Going Well:Update Susan PNH 0 Sat Jul 7, 2018 10:52 PM
PNH mentioned in TV show The Good Doctor Marrowforums PNH 2 Tue Apr 10, 2018 01:01 PM
Possible Cure for PNH Tom Cramer PNH 16 Tue Aug 16, 2011 09:41 PM
PNH Webinar, September 2009 Marrowforums News and Events 0 Mon Sep 14, 2009 04:43 PM
PNH Webinar, May 2009 Marrowforums News and Events 0 Thu Apr 23, 2009 01:16 AM


All times are GMT -4. The time now is 12:58 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org